expERience

Friday afternoon, I of course, had a ferocious headache. I was feeling pretty run down, but nothing totally out of the normal for my life lately. I got out of class early and on a slightly earlier than normal train with a friend and more than thrilled to be on my way home.

Within a few minutes, I knew that something wasn’t right. I was feeling not just unwell, but unstable. When I closed my eyes, I literally began to tip over. My heart was racing. I didn’t feel anxious (in fact, oddly calm), but I felt like my heart was going to beat out of my chest. And before long I was losing my grip of consciousness. I had been tweeting about how poorly I felt, but if you look at my twitter stream from Friday afternoon, there’s a gap where I was focusing my attention on staying conscious.

I got my friend to scoot a little so that I could lay down as much as possible and I focused on breathing. I texted Slappy and told him that I would need him to pick me up because if I did manage to stay conscious, driving home was out of the question.

I made it off the train completely conscious. But I felt God-awful. I had to sit down several times while walking to meet Slappy and I just could not shake the feeling. He picked me up, I got home and laid down. I wanted to badly to avoid an emergency room trip, but after 15 minutes of lying down, my resting heart rate was over 100 bpm (normal for me is 65 at most) and I knew it wasn’t to be.

So we drove the 30 miles to Slappy’s hospital and waited. My blood pressure was a solid 30 points higher than normal and my pulse was not the 100+ it had been at home, but no where near the 60 it normally is. When I told the nurse my pain was an 8 out of 10 she looked at me like I was crazy and offered me drugs. I declined (another crazy look) and got an icepack to wait.

The decision was to draw blood, get a urine sample and do an EKG to check things out. A nurse called me back into the lab/EKG area and placed the tourniquet on my arm. Then she started rubbing up and down my arm like she was afraid of hitting a landmine. And I knew that this was not going to go well.

She couldn’t decide which vein she wanted. In fact, she couldn’t really find any at all. She didn’t ask me to pump my fist, nor really do anything at all, she just left the tourniquet on and poked and prodded. Finally she cleaned the area and stabbed. And got nothing. NOTHING. So she dug. And dug. And then quit. I told her that I needed a break because my fingers were BLUE.

So she switched arms and I swear to God, it was freaking deja vu. Only this time, she decided that she could use the needle she had carefully balanced in a vein to DRIP the blood into the vials. This worked about as well as you think it would. And while she’s dripping blood in, she comments that oh yea, even if this works, she’ll have to try again to place an IV.

And about that time, the vein collapsed. And there were 3 more vials of blood to fill.

So round 3. New stick, same shit. Same dripping technique, same collapsed vein. Only, this time, when it collapsed, I was done. I had burst into tears and when she went in for try #4, Slappy stopped her. She seemed a little offended by this, but justified it with the argument that I have rolling veins. She showed me to the bathroom for a urine sample and left. And so when I walked out of the bathroom, pee in hand, tears rolling down my cheeks, there was no one. And I had no idea where I was. I wanted to lay down and quit everything.

Someone directed me back to the lab area and the nurse sent me back to the waiting room, sans-IV. Eventually I get a room, and a new nurse takes my vitals, still elevated, and she notices that hey, I don’t have an IV. Which doesn’t matter because no one has ordered fluids anyway.

After a fair wait, a doctor comes in and asked what brought me in. His questions were short, his attention span shorter. He seemed wildly unimpressed by everything and uninspired to do anything. He decided it was my thyroid and decided that blood tests were the answer. I, barely, refrain from crying. Because apparently a 4 week old headache was totally unimportant to this doctor. I just about lost it.

Shortly after that doctor left, his attending came in. He, conversely, was totally unconcerned about the lightheadedness and initially very concerned about the headache. That said, once he did a brief neuro exam, he lost some interest. He even, whether intentionally or not, implied that it wasn’t as bad as I presented it. He, grudgingly suggested a chest x-ray (huh?), a CT scan of my head and to get the results of the blood work.

In the meantime, my nurse placed an IV on the first try (she said, and I quote “I could hit that vein with a dart.”) but had no orders for fluid, so that was great. We did the x-ray, CT scan and waited. And waited.

And then the doctor came back, told me that everything was normal and that he could offer me Tylenol 3 for the pain (the ONLY narcotic that I absolutely know makes me ill) and when I declined it, he offered no alternatives. He said I should follow up with a neurologist and that 4 weeks later was not a reasonable time frame, but ultimately, there was nothing he could do. The useless IV was removed, the bill was paid.

And then we went home.

And now, I’m here, still feeling like my head could explode at any given moment and with no explanation for anything. To say that I am frustrated would be the understatement of the century. I’m angry, tired and ready to quit everything.

Today, hell, this week, it’s been hard to be me. And it feels like it’s taking so much more energy just be upright. Today, I’m jealous of anyone who’s not in pain. Jealous of anyone who’s not praying just to have a decrease in pain because the absence of pain seems like an impossibility.

9 Responses to “expERience”

  • This is going to sound absolutely weird and probably counter to everything you believe in, but have you considered an ayurvedic (Indian) practitioner? It might be worth a try and you’d at least get a good massage out of the deal. Also, someone would listen to you. That’s all I got…

    [Reply]

  • Hey there. I’ve been following your blog for a long time now because my son also has a chiari malformation; his supposedly due to surgery from being born without a soft-spot on the top of his head (saggital craniosynostosis). He’s at 9 mm past the line, if I recall correctly … but pretty much asymptomatic except for the occasional headache. The neuro guy tells us we could do surgery now or wait until he is symptomatic, so that’s what we’re doing.

    Anyway, I’m writing to say that I FEEL for your chronic, unsolvable pain and for having to deal with medical people who have no clue how to help you and so just shuffle you along offering nothing. I’ve got my own source of mysterious, chronic pain … have actually had my primary care doc tell me, when I entered the room, “I don’t want to hear about your x!” (X being one of my chronic issues.)

    I once heard something on NPR (actually, I heard it twice!) where a woman with some chronic, serious bowel-related condition FINALLY connected with a doctor who listened closely and with care in his voice and face told her he was sorry she was feeling so lousy. He told her that whatever it was would eventually reveal itself, and when it did, he would be honored to be the doctor to help her. WOW! Now that’s the kind of doctor it sounds like you (and I) need to find.

    Anyway, after suffering for many months with severe gas (“I’d rather having you eating fiber and being gassy than the other way around,” said my doc), it eventually revealed itself as a bad gallbladder. So now I’m waiting–not very patiently–for whatever else is wrong to reveal itself as well.

    I’m writing to say take heart. Even though the medical establishment seems to be failing you, have faith that sooner or later whatever is ailing you WILL reveal itself so you can be treated. Yes, it sucks to be so miserable in the meantime, I know, since I’m miserable with my unseen, mysterious ailments, too.

    I will pray for you and that the “revealing” takes place much sooner rather than later.

    Wishing you a feel-good day,

    Renae

    [Reply]

  • Jen:

    I second Renae – take heart! Hang in there! And keep bitching to every doctor about the pain! My mom, who has had numerous medical problems, often has only gotten real help from doctors after she’s complained and complained every time she goes to the doctor.

    And screw everyone who doesn’t believe you, or treats you bad! You don’t need that crap!

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  • Can’t imagine pain that bad lasting that long.

    Not sure what I can say to help but just know that I’m thinking of you.

    Hallie

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  • I can’t imagine what it must be like to be in that much pain for that long. A headache is so debilitating, particularly since your head is, um, somewhat vital to daily activities. It blows my mind that the doctors could be so dismissive.

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  • If I remember correctly, sometime in the very recent past you had a massage – and as a result of that massage you had a temporary respite from the pain.

    If I were you, I would see that as a clue. And I would also be looking for another session with that masseuse/massage therapist.

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  • I’m so sorry, Katie. No one should have to go through that! That fucking sucks!!! I wish that I had gone to medical school and specialized in neurology and had some kind of super breakthrough discovery so that I could help you right now. gah!

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  • Sue G:

    Katie, I am in intractable pain every day for the last four or five months. I did something to my back while boxing (although I think it is more chemo related) and it just isn’t getting better. BUT, if I sit right, don’t move quickly, adjust for nerve pain that will surely come when I move, I can find some physical peace.

    Having a headache of your proportion is so much more difficult. It affects everything you do, including think, focus, move, you name it. I wish more doctors understood just what continuous pain can do to a person.

    I am praying that the neurologist you finally see will be the saving grace, that he will identify your problem and find a way to fix it, and mostly that he will be kind, caring, intelligent, compassionate and helpful.

    Everyone deserves that. But you, especially, since you have lived with this for so long. I never hear whining in what you write. I hear frustration, fatigue, and fatalism. And that makes me sad.

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  • Hang in there. I know it sounds so shitty and impossible, but you’ve got to. Maybe you could try another hospital. Sometimes you just have to keep looking for that one doctor who will care enough to keep trying until they find out what’s wrong. Do you have a specialist or a GP? (I haven’t been reading as often as I should, so I apologize if I’m missing something here. I know you said you moved, but I can’t remember if you found new specialists and all of that fun stuff.)

    Hang in there, hon. *hugs*

    [Reply]

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About the Brain
Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
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